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From three years ago and updated but still a treat (get it?)…..enjoy. Happy Halloween.

Within the next week will be Halloween. Halloween means so much to kids. Our kids with diabetes are no exception. I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, Was a common response. Not really necessary, but we just said thank you for their thoughtfulness…..and they were very; thoughtful. People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that Kaitlyn would do that ‘going low thing’ and it would not only occur; but almost always at the exact same block each year. (Spooky, huh?) She would carefully choose something out of her bag full of treats (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’—but letting her choose something from her Trick or Treat bag…why not?). We would wait a few minutes and continue on. Fun and frights continued.

By time she was out on her own in junior high school (in an era of no CGM like DEXCOM may I add) she was pretty well versed on how the drill worked on Halloween. In a recent conversation neither Jill nor I could remember any major adjustment on this date (and remember prior articles of mine stating Kaitlyn was considered as ‘brittle’, which translated meant she was extremely tough to control….it was a phrase we hated). On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.

Let them.

I remember many conversations from people over the years who do not live with diabetes; how much Halloween must be a ‘disaster’ for us, having a child “who cannot eat candy”. People thought that we would deprive our child of this incredible right-of-passage. Those of us ‘in the know’ know better, don’t we? 😉

If you do not know….you should learn how close to normal you can make this day. Our kids are not driving close to a cliff during this day. Don’t treat it as such. Yes, be smart but every time you feel the word ‘no’ coming on……change it to making it about choices.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate, what ALL THE KIDS ate; and we went through it all like every other parent did each year (you would be surprised how much leeway THIS gave us on removing ‘stuff’, think about it).

We all do/did ‘Halloween’ things.

There are many things that you can find online about kids, diabetes, and what to do. Today I want to check in with where YOUR head’s at. Parents? You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween, never missed a day in all those years; and it should not stop you either. Go and enjoy. This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid? Nah…….enjoy; Halloween is nothing to ‘spook’ you.
…….and as a side note; Kaitlyn sits as an RN to take her CDE test in January. Yes my dear colleagues/parents-in-arms…….They. Can. Do. Anything.I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

This week is Diabetes Blog Week, the brainchild of Karen Graffeo at BitterSweetDiabetes.com and is the sixth year it has taken place. Many writers taking-on the same topic…….but with a different take. Very cool idea……thanks for the opportunity Karen.

Today–Day 3: What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it?

PLEASE make sure you add your thoughts on what it means to you, after you read today’s article.

My ‘closet’ needs to be cleared of the frustration I feel in this search for a ‘cure’. It is not something of which I can easily let go. It’s the promise I gave to my daughter and again to my son. But the results in the research world just seem to be so much slower than the research and development of devices and management tools.

Did you ever see the cartoon of Pepe Le Pew (for you younger folks, go to YouTube). Pepe is a skunk who falls madly in love with a cat who has crawled under a newly painted fence giving the black cat a white stripe down her back; thus causing all sorts of confusion for the star-crossed Pepe who spends every cartoon trying to ‘win her over’……never winning. Usually there is a point in the cartoon that will have ‘La Chase’. The cat is all out of breath but Pepe, full of love, is in a twinkle-toe run without losing a breath.

That is how it feels sometimes. You see; when you know what you want, and a device surely fits that bill, it is easy to throw all of your resources to ‘make that thing’ happen. When you are unsure what will work, it’s a much slower pace, and a lot of trial and error to get to the finish line. With a device, you get an idea of what the end picture needs to be, and you work toward it. With ‘a cure’—-not as easy.

That said, let’s be clear, there has been much trial and error in this device arena as well. And surely the end product is not going to look like everyone thought it would when the development began and where the thought was that there will be no personal intervention needed……I think everyone now knows that won’t be the case because we are human beings and not robots and our lives will influence something mechanical. We will always need to be involved in some way. Things change while being developed. It is also happening much slower than we all thought it would and were told as well, isn’t it? But that’s okay too. That is the world of set-backs, FDA governing in research; and all part of ‘the process’.

But we saw CGMs and insulin pumps ‘metamorphasize’ into everyday devices so we can picture that happening. We can see a ‘device’ go from A to Z. We will get there. But what does a cure look like? Since it has never been seen before (the closest being islet cell transplantation but with immunosuppression in place, not the answer; BUT some people are still off insulin–so even though not THE answer, we ‘tasted’ some of it), it is hard to recognize where it is hiding. I have been at this a long time and I know we (the global diabetes community of wonderful researchers) will get there. But being as closely connected as I am does not absolve me from wanting it any faster. Being a dad wanting it faster is the frustration that gets to me sometimes. I need to learn to let that go. It is counter-productive and can leave one mighty lonely sometimes.

But THAT more than anything else is also the very same thing that keeps me at it everyday. I have learned not to defend what I feel because everyone has their own feeling and that is their right. They can support who they want and even say what they want touting whoever it is they believe in, which is fine also; that way we can all learn what is out there.

My kids are at the finish line each holding an end of the red ribbon waiting to be cut as the cure crosses the line. It’s no secret of the faith I have in the DRI (disclaimer as everyone also knows that I work for their Foundation), but quite frankly (and I have said this before), me being a dad trumps how I feel about any entity……I just want to get there.

And THAT can get frustrating some times…….and I need to clean that out of my closet. There is too much happening right now moving that process forward, good things. But I want it yesterday.

DAY 2 TOPIC: Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.

Day 2 of the 6th annual blog week is listed above. There is an absolute-ness of things that I will not write about. It’s kind-of-a line that I have drawn for myself. My kids have asked me not to write about certain aspects, and I have adhered to their wishes. If I choose to write about things on my mind….it does not mean I have to share things about them.

It is the same with other family members. Again, it’s my choice to write, not theirs. I must be respectful of those things that have been asked. I could tell you more……but….I will stop there. Are there things that you will not share out here in the online world????….feel free to share them as well.

Did you ever ask yourself why others seem to have the doctor from diabetes’ heaven and others leaves you scratching your head? In my years, I have never been able to figure why there are such differences out there, but there are. But it is not always just about the doctor.

What I do know.

Without a shadow of doubt there is NO QUESTION on the importance of the medical team who treat our children. I also know that the more we know, the better advocate we can be. There is surely a difference between challenging your doctor while being informed and merely asking questions about something that may result in better management care for your child.

There is a difference between asking should my child be on insulin pump and stating; “I think this about pump ABC and Pump XYZ; but I also feel ‘this’ about the new insulin pens out there, what do you think?”

Which seems like the better approach to you?

In 1999 when Kaitlyn wanted to go on an insulin pump, we did our homework, and not only were we ready; we informed our doctor that we wanted to wear a pump also (filled with saline) so we knew exactly what it was like for her. We were that determined. (and we did, btw)

If there was any resistance in the past, it was now gone. And away we went and it changed the entire practice as they became one of the leaders in insulin pump therapy in this area.

If you look to your medical team for answers and have done no homework, you will receive nothing but their advice to consider. Good as that may be, if you do your homework, you can ask questions about what you have found out and the BEST approach moving forward as a joint decision. You have one patient (unless of course you have more than one child with T1), they have hundreds. Know what is best for YOUR patient, in your opinion; and discuss.

There is not ‘just one’ of anything anymore and there are certainly more than one approaches to diabetes care. Educate yourself and you will be much better off in the decision-making process for the proper day-to-day management of your child. And if you have tried everything you can and your doctor is not on the same page; look around for another.

No matter what decision may be facing you in this diabetes world, know this; the decision has been made before by others. Is anything really that new and/or so unique in this world? If the connection of social media has taught us anything, it has taught us that someone out there has gone through what we are going through. And in many cases they are willing to help.

In the case of diabetes supplies, know this—-there is huge competition out there to gain your business. For a second, well try anyway; take all of the emotion out of the equation. Look at your child’s diabetes as if it is a business. Because from a consumer/supplier point-of-view it is SURELY JUST THAT! Don’t let that scare you, use it to your advantage.

Do you ask one person about buying a car? No. You ask a bunch. You investigate. You go online and you kick the tires of more than one…….right?

Why, when looking to purchase a device, would anyone take just one person’s ‘say-so’ on such an incredibly important decision? And the one person YOU SHOULD NOT leave out; is the sales team for the device. Cell them directly.

From a business perspective, they are going to make tens of thousands of dollars from the device you are about to buy. If you walk into a car dealership and tell them that you are completely sold on their car, you like it, you investigated it, and you know you want it: and follow-up by asking them to give you great price——forget it. You already tipped your hand. And any sales person knows it. Don’t give away the house. Don’t tell them you are all set to buy or you will get nothing ‘extra’ whatever that may be.

And the same if you are ready to ‘renew’. If you ever leased a car, YOU KNOW they are contacting you long before your renewal due date ready to make a deal. I went into my phone dealer and said I was ‘thinking’ about my plan, and looking around (and I have been with the same company for twenty years). They threw in the newest version of the phone for free and topped it off with a 20% discount EVERY month if I would stay.

Say nothing…………………get nothing.

Diabetes supplies are the same thing. Sure there is only so much sales reps can do but know this; they do this ALL THE TIME. They know the ins and outs of insurance, doctors, prescriptions, deductibles and THEY DEAL WITH IT ALL THE TIME.

Annnnnnnnnnnd they want your business. So call them and speak to them about your concerns and see how their company can help solve your problems.

Always shop first and see what someone can do for you. Also letting them know that you are active in the diabetes world is not such a bad thing either. Because if they treat you well, you will tell others how good XYZ Sales Rep of XYZ Company was in solving your problem. That results in continued sales. They understand this VERY well (why do you think they call on so many doctors’ offices?).

You are the consumer making the purchase and in this day-and-age; there is so much competition. Make them WANT you.

So as you look to purchase diabetes devices…….don’t run out and get the first thing that comes along; ‘kick a few tires’ first. Make them WANT your business enough to fight to get it. You just might be surprised at the results.

Wherever and whenever you deal with diabetes supplies—the last important supply YOU SHOULD ALWAYS pack is a check list. How many times have you gone to the school at the end of the school year to pick up the remaining supplies only to hear, “No that was not here.”?

Instant tension.

It’s not intentional but remember there are hundreds, if not thousands, of children in a school system. Help them help you to avoid one’s word against another. The last supply added should be a check list of everything enclosed. When you pick up the supplies, of course juice boxes and edible items for lows would be diminished; but what about the spare meter, the extra 5 syringes, the bottle of insulin, pump supplies, and of course, the glucagon.

When we dropped off the items, we had 2 copies of the check list and we signed both and the school nurse signed both copies at the beginning of the year. When we picked up the items, there was no question what should be ready to be picked up. While we are at it……a call every two weeks to check if anything needs replenishing is not a bad thing either.

Same for when your child spends weekends away at someone else’s house. You probably do not have to have the other person sign a sheet but you having a list with you will help you remember something when you pick up your child. When visiting, we also would place our car keys attached to the diabetes bag; kind of hard to leave the bag behind in a rush if you have your car keys attached.

Just a couple of quick tidbits on keeping track of the supplies. You go many places and do many things and a bottle of insulin here, and a meter there, and glucagon also—all of these left behind can not only cause grief but CAN GET a tad expensive also.

Plan ahead to avoid such hassles……..you have enough on your plate…….right?

When I began the Child’s Cry for Change initiative and Kim May (A Texas dMom) and I began Get Diabetes RightFB page; I thought if we saved one child’s life, it would be well worth it all. I did not expect it so soon……which only translates how much more work we have to do. No child should be diagnosed with T1 diabetes when it’s too late. None! Not one.

I was given a post tonight that included a story from a mom who posted about a newly diagnosed child. She was given the poster from Get Diabetes Right and she acted quicker in getting her child to a hospital and sure enough; the child was placed on insulin and diagnosed with T1 diabetes.

In the post she wrote: It’s just possible the sharing of these symptoms (pictured above) saved a life today, and they could again. Thanks for reading.

In as much as I’m completely excited about this feeling of playing a small part in this specific incident; it only serves as a reminder for all of us. You may never know what role you play in saving someone’s life. Something you do today may have an impact beyond understanding tomorrow. Posting signs in a library, in school, or in supermarkets just may be seen by someone. Checking children for diabetes at the first possible signs—-IT MAY NOT BE THE FLU.

It may not be the flu. If the flu-like symptoms were meningitis (this post pointed out) or thought to be meningitis, reaction/action would be swift. But the same flu-like symptoms may also be a full onset of DKA; and the results could be disastrous. WHY is there not a test done…….too expensive??????…….tell that to a parent who lost a child. If a child is in DKA and shows flu like symptoms, even starting with a simple urine test to check for keytones could be a start.

A simple test can start a patient on the right regime of taking care of themselves BUT ONLY if they know. I get that if you take out a glucometer and check a child’s blood sugar level; it cannot be used for a definitive diagnosis but if the number is 625, you can rest assured it warrants the correct testing for a true diagnosis……yes? When I write or lecture just “Don’t Do Nothing” I really DO NOT mean it as just a rhetorical ‘cheer leading’ let’s get out there and change the world.

I again ask you; print out a poster, or 2,3,4,5, or a hundred and plaster them all over. It is a GREAT boy/girl scout project. A great community service project. I literally shook last night as I read the entire post of this story. (It was also great to talk to the mom about it as well). To think we my have played a role in saving someone’s life, even a very small role,……….it’s a VERY special feeling.

Nothing will get done without involvement. No ask for money. No really stressful situation to organize. Just print out posters and post them around town. Go to Get Diabetes Right on FB and find out what you can do. There is a choice of posters you can print or you can request for a pdf file to be sent to you.

Just ‘don’t do nothing’………………………it literally just might save a life. We HAVE WORK TO DO!!!!

Ever have one of those days that you feel like the entire world is collapsing around you? The feeling that no matter what you do, diabetes is just…..well……plain and simply put…..kicking your ass? No matter what you try the numbers is locked into a high…..or a low…….you know that feeling? You KNOW that feeling.

I have always found that no matter what life throws at us, and this includes dealing with diabetes day in and day out, the next day arrives. In most cases another opportunity is given to make something ‘happen’. You know that saying that when God closes a door he opens a window? Yeah….well…..I never believed it. Once the change came, it was mine to deal with.

I believe when a door closes it is up to each one of us to decide what to do next. A magical door never opened in my life. I have always believed that the harder you work, the luckier you are. Don’t get me wrong, I believe in God and I believe there are some incredible things that happen to each of us. I just do not believe that God sits on a throne with a majestically spiced wand bestowing good changes at different times saying you…..you…..you….and now you.

I think, as I have been taught, that ALL things come from God. God gave us life and I always felt He (humor me…I think He is a ‘he’ but I’m very open for discussion about the idea) has a lot more/better things to do than intervene on every single change in my life. I just don’t think it works like that.

Our road has been a long one. It has been a hard one. In the early days we had nothing; and I mean nothing. And one of us had to stay home almost since the day Kaitlyn was diagnosed at age two. It got even harder. Change was no choice.

Would I change any thing?

How many times do we ask that question? Sure I would. I would like no illness and all those I love still to be alive. BUT it just does not work that way…..does it? Life……is just that…….life.

I do know that no matter what is thrown at us, we will get through. Because whatever change we have been given thus far, we got through. We have all worked very hard not to be beaten. And we won’t be. We become the people who we are because of the things we go through. When we fall we get back up. When we are down, we move forward no matter what; because what choice do we have? We have also laughed a great deal. We have listened to music. We have enjoyed the people around us. And every now and again, I am guilty of dancing as if no one is watching. Why not……right?

I know this; I’m the person who I am because of the things I’ve gone through and the only constant in everything is that I always moved forward. And because of the things I have gone through, I have met the most incredible and wonderful people who any man has a right to know. Truly wonderful people.

Someone once told me that if you can pick 5 true highlights in your life by counting on one hand; your life has been a full one. I know this; I went through all of my fingers AND toes a long time ago. My life is more than full.

So if life is getting you down, I can not just tell you to cheer up and it will all go away. I can tell you that I have been down a long road in my 56+ years thus far and I surely hope and pray that I only just passed the half-way mark in my life. Life is for the living and if you ARE living…..it’s up to you to make of what you have no matter how good…..or bad you think it is.

George Baily was not the only one with A Wonderful Life…………so are you. But sometimes we have to look to make it that way…………right?

Winter. For those who will be experiencing cold weather over the next few months, do not fall into the misunderstanding that your children, with diabetes, will use less energy in the winter than when the weather is warm.

For some reason, and I may be alone, seeing my child all bundled up meant that she would certainly move less, spend less energy, and certainly her blood sugar would be less likely to drop…..right?

Well, actually, because they are bundled up, they may use more energy because they try harder to move all bundled up. If your child is going sleigh-riding; it may take more energy to go up and down the hill than swimming in a pool. Clothes restrict movement, clothes add weight, more clothes translate to trying harder to move which may impact blood sugars. So if they are doing an actual event like skiing or sleigh riding, keep an eye on those blood sugars.

On the other side of the spectrum, colder days can translate to less activity because children are not out running around in the warmer weather. So just when you think you have their day figured out, their numbers seem askew again.

Blood sugars tend to be higher in cold weather as well. The physical response is not too unlike what happens to blood pressure and heart rates which also rise in colder weather.

If it is your first ‘go round’ with the colder months, just a note to remind you of the impact the cold can have on your child’s diabetes. If you are a pro and have this all figured out…….this is a reminder. And if you do have it all figured out, please contact me because after 22+ years at this; I still scratch my head sometimes trying to figure out why things happen the way they do.

Also, insulin will freeze. If you see ice crystals inside your insulin, chances are that the molecular structure of the insulin might have been impacted, and the insulin will not work as you think. Since most insulin pumps are worn so close to the body, your body-warmth will keep the insulin in the device at a correct temperature, so that is not to worry. I’m speaking more about insulin being carried around in the cold, left in the car etc. etc.

And for those who live in warmer climates; you may be visiting colder areas (why? I am not exactly sure why you would do that 🙂 ) and this information might come in handy.

If anyone else has any tips, please feel free to chime in—-we could all learn something new.

I write this article today because so many times I read about people who are just unsure what the future will bring. Once your child is diagnosed with diabetes, the future becomes a question mark. Not necessarily because we believe it’s a question mark; but because many ‘outsiders’ tell us it should be such.

I write this article today because I want you to know, IT DOES NOT have to be that way. I never once doubted that this day would come……..and now it’s here. My breaking heart is flooded with tears of joy as within the next 15 hours, Kaitlyn will have moved on to a different journey away from home.

I would have thought that this would be temporary but when Kaitlyn opted on an apartment instead of a dorm room; my instinct said that Kaitlyn just may have bigger plans than just the one year of school ahead. University of Rochester has an excellent program (with an excellent Medical Center) beyond a BSN (RN with a Bachelor’s Degree) for a Nurse Practitioner and Kaitlyn may, or may not, take advantage of that program but she clearly wants to be ready. Thinking back, Kaitlyn has lived her life in that manner; always………….’ready’.

For 24 years 7 months and 29 days, this address is Kaitlyn’s home, with us. It will still be her home but she will have a new address now. From the day Kaitlyn was diagnosed on September 26th, 1992 we have worked for this day to come. I still remember the doctor….yes a doctor….putting his arm around my shoulder saying that we should ‘hope’ for college but don’t plan on it. He wanted me to know just how horrible this disease can be? All sorts of things could go wrong.

Really?

That answer, although never accepted, became my power-stick to prove whatever the thought process was in the nineteen-nineties completely wrong. Our education began. And in the heart of this came The Children with Diabetes and those wonderful Friends for Life Conferences. Being there from the beginning has allowed us the wonderful ability to link across the globe with the brightest and the best in the world.

Cannot was replaced with will.

No was replaced with yes.

Doubt became live life to the fullest potential you have.
There is no amount of gratitude in the world to thank Jeff, Laura, along with so many others, and what they all they have done with CWD, in impacting our lives in so many wonderful ways.

Many of the things I lecture or write about are taken from my real life experiences. My mistakes (I am an expert), our triumphs (we have had many), our setbacks (many of those too) and our education have helped set a pathway that Kaitlyn has forged; and she has had one thing instilled her life more than anything else………diabetes would stop her from nothing.

I tell you that so YOU know, beyond a shadow-of-doubt, that tomorrow is yours to grab. As Kaitlyn grew up, she has had many friends, relationships, and achievements. She was a class officer, part of the homecoming court, part of the prom court, she lettered in a sport (just because she wanted to), and has excelled in community service and academics that led to scholarships and awards. She was a Girl Scout Gold recipient. She finished her undergraduate studies, she was in the work force as a Program Coordinator helping patients; and now heads to the University of Rochester to continue on her pathway to becoming a nurse practitioner specializing in the very same field of the disease which was supposed to give her so much uncertainty.

Take that diabetes.

Kaitlyn is a very bright girl. She has had down time. She can share with you how she realizes that many, in life from diabetes and other causes, are not around today. She knows. But she also has realized that if she gets excited at the things in her stocking, that it can only get better from there……..that is Kaitlyn. Grab life for THE NOW.

Sure I’m proud, what father would not be; and I hope my ‘gushing’ is acceptable today? But more than my pride in Kaitlyn, I WANT YOU TO KNOW that Kaitlyn is just like anyone else facing the same obstacles. Your child must be given the wings to soar. Educate yourself and your child. Wings don’t just happen. You make them.

Sure there have been bumps, but I have come to realize that no one is immune from life. Life will throw all sorts of crap at you and you cannot do anything about that; but you can do something with it. And THAT is how you make those choices……….yours.

So as the moving truck takes off, I will surely shed a tear. But that tear will also be full of joy knowing she is on a road to do exactly what she has chosen to do. Start doing everything you can now so when that day comes your child will have all the knowledge needed to be………………………….ready.

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.